IRF2BPL – Patient Worthy

Rare Community Profiles: Yellow for Yiannis: Angela’s Mission to Advance Research into IRF2BPL

Post author:Jessica Lynn
Post published:April 3, 2024
Post category:Alstrom syndrome IRF2BPL-related disorder Rare Disease

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

Four Young Boys Diagnosed with A Rare Disease So New It Was Given A Number And Not a Name

Post author:Rose Duesterwald
Post published:November 1, 2021
Post category:Rare Disease

According to a recent article in Yahoo News, unless treatment is discovered or a cure is found for a disorder called IRF2BPL, these young children will lose the ability to…

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ICYMI: This Mother Showed Doctors Videos of Her Son Chatting and Running Around Before he Regressed. They Finally Found an Answer 12 Years Later

Post author:Sunniva Bean
Post published:October 28, 2019
Post category:Rare Disease

As originally reported on NPR, Alex Yiu’s mom has a montage of her son's early years. As one watches the videos, you see something: him losing control. He begins to…

Four Young Boys Diagnosed with A Rare Disease So New It Was Given A Number And Not a Name

ICYMI: This Mother Showed Doctors Videos of Her Son Chatting and Running Around Before he Regressed. They Finally Found an Answer 12 Years Later

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